Monday, December 31, 2012

Pictures are painful and joyful. Every time I look back at pictures I say the same thing, "Thank you God for giving me the wisdom to be here to watch them grow." I looked back through my January pictures and couldn't believe we were outside without jackets most days. It is snowing right now and is very cold. I was 5 1/2 months pregnant with Damaris.

Damaris in 4D ultrasound.

Damaris in 4D ultrasound. 5 1/2 months on the inside.

John's family gathering to celebrate the New Year.

Vianney had her tonsils and adenoids out. Glad that is over.

Clairvaux was the baby I sat near the swing with.

Always the perfect child.

Clairvaux builds complex Lego designs at 1 1/2.

The Divine Secrets of the Ya-Ya Sisterhood.

Dominic's 9 year old Lego playing hands.

Dom's constant attempt to enter Lego contests through Lego.com.

Lego groupies.

Dominic's nine year old hands.

Watching the Nebraska Bowl Game.

A blanket John's parents received of their current grandchildren with six more to add now.

Sunday, December 30, 2012

This little boy is my cousin's son, John-Paul. His story is listed below. My cousin, Jaime (Black) Charbonneau, attended Franciscan University of Steubenville from 1994-1998 then went to work for HLI (Human Life International). I know the world wide web is known for its generosity towards amazing people. Wouldn't it be wonderful if we could help this wonderful family out? They are looking to raise $25,000 for two vital machines for his health. My goal is to find 1000 people to donate $25.00. If that is not possible, any amount would be a wonderful act of love towards their saintly little boy. Thank you and God Bless You. We thank you in advance for sharing this link if you feel called to. A link is provided below for donating purposes.

Our seven year-old son, John-Paul, has been greatly debilitated from his chronic seizures. After many hospitalizations and ER visits--too many to count--and after no medical interventions made much difference for John-Paul, we have been able to help him with a number of physical therapies.

In fact, with his current therapy regime, he has not been hospitalized for three years. As he grows, however, his continued progress will require machines and training that we cannot afford. With them, we expect to see John-Paul continue to improve, have fewer seizures, and to someday learn to walk.

Please consider helping us continue to help alleviate his on-going suffering by donating to our fund to acquire these machines and training for John-Paul. The first machine is called a Quadriciser. It is a device that has helped many disabled with their mobility problems, and ultimately would help him to walk. The second machine is called a Hyperbaric Chamber and will greatly help to reduce his seizures and improve his overall health. We also wish to return to the Family Hope Center in Philadelphia where we have learned these therapies that have helped John-Paul.
For a more detailed description of why we need these machines, please read John-Paul's history and condition below
.

For those that do not know John-Paul Charbonneau, he is our seven-year-old son, who, despite having a very long and trying delivery, was born a healthy, normal, baby boy. He was very strong and was developing well. When he was three months old he had his first seizure, and little did we know that it was the beginning of a very painful and difficult journey. He had many more seizures following that first one. His third grandmal seizure eventually stopped his breathing and he had to be rushed to the hospital in an ambulance. We had no idea that this panic-stricken and heart wrenching scenario was to become a routine for him in the years to come. Just three month old and fighting for his little life, the doctors and nurses frantically tried to stop the seizure. Since he wasn't breathing he had to intubated, meaning he had to be hooked up to a breathing machine. It was hard to imagine such a little person could be so covered with wires and tubes. The neurologist tried many different types of medicines over the next few months, but he got progressively worse. In fact, it seemed like the medicines were making him sicker.

Our life revolved around finding ways to stop the seizures from happening, as his seizure condition developed to the point that he was having seizures that stopped his breathing regularly. Every single night he would have seizures.

We would be up a dozen times with him every night just hoping that the seizures would stop. At JP's worst, we were in the emergency room two or three times a week.

After 14 ambulance rides we stopped counting and by the time he was one he had been admitted to the ICU 30 times. We never knew when we were going to lose him to one of those seizures, and the doctors didn't know either.

Desperate to find someone that could help, John-Paul had seen four pediatric neurologists by the time he was one and none of them seemed to know what to do for him and could not find out what was wrong with him.

He has had most every test available - complete MRI and CAT scans, metabolic and genetic testing, EEGs, EKGs, with no results explaining John-Paul's condition. Their answers were to either increase or change the medicines, and this seemed to make his situation worse, not better.
When John-Paul's last pediatric neurologist told us that, at this point, our guess was as good as theirs as to what to do with him, we knew that we had to take responsibility for finding something that would finally help him.

Through the miraculous help of many generous people we have found many things that have been able help John-Paul. One such example is a center in Philadelphia that specializes in helping parents take care of their special-needs children. There we were given a customized program of intensive therapies that significantly reduced the seizures. Later, we found that his diet had a significant impact on his health.

After much research and trial, we have found one that has made significant strides in healing for him.
Through these and many other natural methods, John-Paul has been healed enough so that he has not been in the hospital for three years. Getting him to this point has been slow and painstaking, but now that he is here, we believe that he has never been at a better place to reach his full potential through his therapies.

Unfortunately, all of the things that we have found that help John-Paul are not covered by our medical insurance. We have done all that we can with the limited resources that we have, but there is so much more that we could do for him, and we could use financial help with the things that we do for him now.

Saturday, December 29, 2012

The stomach bug is slowly making its way through our home so last night as John headed to his family's Christmas with those who were well, I stayed back with those plagued and those who cause a ruckus (Truman). From my perch on the couch, Truman hovered over me asking for cereal. I made her a bowl and flopped back on the couch. She then runs back into the living room and muttered something about needing a book. I found her as pictured eating bite after bite while reading a chapter book. The best part was her seriousness regarding the whole issue. She has seen her siblings do this so why not?

Friday, December 28, 2012

Lillie and Rose write John and I a love note every night. They have done this for about 6 months. If anybody else is in the home at night, they also receive one. Lillie writes a lot so it takes her some time. I have come to look forward to them each night as I know that someday I won't get one. I was away for the day and came home to this on the dry erase board. They will never know until they are mothers how much I treasure this. I have kept each one. Ridiculous, I am sure, but I can't bring myself to throw them away.